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Troy's Journey, Wayne, NJ (2025)

Our "Baby Boy Troy" was born prematurely on August 17, 2012 at 29 weeks & weighed only 2lbs 6oz. At just 2 weeks, Troy became very sick & developed a blood infection. Because of this he had to go back on the ventilator and had multiple blood and platelet transfusions. But our little fighter pulled through as always and beat the odds. At his one month head ultrasound we found out our baby had Periventricular leukomalacia (PVL) a brain injury characterized by the death of the white matter of the brain. Troy spent 51 days in the NICU before we were finally able to take him home on October 7, 2012. At about 7 months he started physical & occupational therapy as well as vision therapy. Troy also battles infantile spasms (a specific type of seizure), cortical visual impairment, feeding issues, reflux and more. Most recently Troy was diagnosed with cerebral palsy spastic quadriplegia on January 7th, 2014. Troy has severe gross motor delays and will require extensive therapy. Troy also requires adaptive equipment such as wheelchair and stander etc. Troy will need longtime specialized care & assistance. Although we were heartbroken with the news we have faith in our little fighter and know that he will get through this as he has everything else. This is Troy's Journey. Here you will see his challenges but mostly be amazed by his accomplishments. He is our miracle and we want to share him with you. I hope you all will learn as much as we do from our little fighter Troy on his journey. Any donations for Troy's Journey would be greatly appreciated. Please note we are not a 501c so these cannot be used as tax write offs. PayPal: TroysJourney17@gmail.com

03/25/2025

Don’t forget to wear your green tomorrow, March 25, to show your support for Troy and all the incredible Cerebral Palsy Warriors! Let’s spread awareness and stand together! 💚

03/22/2025

As we get closer to Cerebral Palsy Awareness Day, I just wanted to share a little bit more about what CP means to Troy. 💚

👶 Premature birth. Troy was born at 29 weeks & weighed 2lbs 5oz. He stayed in the NICU for 51 days before we could take him home.

There are different types of cerebral palsy, but Troy has cerebral palsy spastic quadriplegia, which affects both his arms & legs, torso & face. ✋🦵 Quadriplegia is the most severe of the three types of spastic cerebral palsy. Due to his high muscle tone, Troy must take two different types of muscle relaxers 💊 to reduce his tone & discomfort.

🚶‍♂️ 1 in 3 are unable to walk. Troy must use a wheelchair ♿ & other assisted equipment like a stander & gait trainer to be in an upright standing position.

🗣️ 1 in 4 are unable to talk. Troy is nonverbal. He depends on his communication switch, as well as his facial expressions, cries, & yells to communicate.

👀 1 in 10 have severe vision impairment. Troy has Cortical Vision Impairment & is legally blind. His vision has been described as if he sees the world like a kaleidoscope: a swirling mass of color that doesn’t have meaning or recognition. 🎨🔄

⚡ 1 in 4 have epilepsy. Troy was diagnosed with Infantile Spasms when he was only 6 months old & continues to suffer from epilepsy. He takes two different medications 💊 to control this.

🌙 1 in 5 have a sleep disorder. Troy has had trouble sleeping since he was a baby. He currently takes two medications to help him sleep. 😴💤

🥄 11% have feeding tubes. Troy got a feeding tube when he was 2 years old due to his inability to eat by mouth or drink from a bottle.

💩 Prone to digestive issues. As a result of his CP & inability to walk, Troy experiences constipation & severe gas pains. He regularly takes Miralax & Senna to treat this.

To help & support Troy, he has 5 Physical Therapy, 3 Occupational Therapy, & 3 Speech Therapy sessions a week. 💪🧑‍⚕️

Troy’s smile is contagious & lights up a room. 😄✨ He loves music 🎶 & has an amazing sense of humor 🤣. He may not speak, but he is fully aware of his surroundings & understands what is going on.

This is Troy’s Journey. 💚 You will see his challenges, but mostly, you will be amazed by his accomplishments. 🌟

💚

Tatiana Barboza Jarrell

03/03/2025

March is Cerebral Palsy Awareness Month! 💚♿

This month, we celebrate, educate, and advocate for those living with cerebral palsy—just like our amazing Troy! Every step forward, every milestone, and every moment of joy deserves recognition.

💚 March 25th is National Cerebral Palsy Awareness Day! Join us and by wearing green, sharing Troy’s story, and spreading awareness!

Together, we can make a difference—one conversation, one act of kindness, and one wave of green at a time! 💚♿

02/14/2025

So today, Troy had his routine alcohol and Botox injections.

Before the procedure, I spoke with his physiatrist (a specialist focused on the nonsurgical treatment of musculoskeletal conditions that cause pain and/or physical weakness) to go over where Troy would be getting his injections. As usual, we targeted his hands, arms, and hamstrings. We also decided to continue injecting his salivary glands to help reduce drooling.

Even though we’ve been doing this for 10 years, it never gets easier watching him go under anesthesia and wake up so uncomfortable.

The procedure lasted about two hours. Troy needed some oxygen since his levels were low, but they stabilized once he fully woke up. Unfortunately, waking up was miserable for him. He was in pain from the injection sites, and the alcohol injections left him feeling “hungover”—his breath even smelled like alcohol. They gave him Tylenol, morphine (twice), and Benadryl, but this part always breaks my heart. No matter what I do, he’s in pain and crying, and I feel so frustrated and helpless. The doctors and nurses look to me for answers, but all I can do is try to comfort him the best I can.

We’ve found that getting him dressed and into his chair helps calm him down since he knows that means he’s one step closer to going home. Once we got home, he rested, and we kept up with Tylenol to make sure he was as comfortable as possible. He should be feeling better soon, but this first day is always so tough—for him and for all of us.

We just have to keep reminding myself that the benefits of these injections outweigh this one really hard day. They help with positioning, range of motion, decreased pain in stiff muscles, reduced spasticity, greater ease in stretching, and improved tolerance of his braces.

Praying tomorrow is a better day—especially since he’s so excited for his Valentine’s Dance at school! 💚

01/07/2025

2024 Was a great year for Troy! We campaigned and he won the election for Middle School President! From posters, to stickers, cupcakes and star squishes we pulled out all the stops ⭐️

Couldn’t be more proud ❤️🤍💙 Tatiana Barboza Jarrell

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Wayne, NJ
07470

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